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• took steps
• Posted: 2008-03-30 10:45:56 By jana p
• to everyone that replyed to my message thankyou. Well i took some steps for our son, he will be going to a low vision clinic in april, they will be testing him on his abilities, we will be staring brail when he starts kindergarten and then in may he will be going for a check up in ia city, hopefully they will have our blood work done so we can have somekind of idea of which RP he has. we are taking things one day at a time. i tod him about his rp (he's 5) i dont know if he understands but when i said you have rp hes responce was he thought he had some kind of pig in him ha ha. we laughed about it, they are so cute. i will keep telling him. thank again everyone. janap

• Re: took steps
• Posted: 2008-03-30 15:27:53 By Darran Z
• Are you seeing Dr. Edwin Stone? If you are, then you've got the best in Iowa.
  
  You can also learn Braille along with him. I would suggest you contact Hadley School for the Blind (www.hadley.edu) and look at the Family Program they have. You will qualify to take these for free since your son has RP. There are other classes available too that might be useful to you as a parent to help understand what your son is going through.
  
  I recently was at Hadley last October and met a grandmother who learned Braille because of her grandson (who is the same age as your son). It was very touching to see how Hadley had influenced this grandmother's life in helping her grandson.
  
  Darran

• Re: Re: took steps
• Posted: 2008-03-31 19:30:48 By jana p
• yes he is seeing DR.Stone, he is very nice and works very hard for RP. your good. JanaP

• Re: Re: took steps
• Posted: 2008-04-01 16:20:27 By jana p
• darran, tried to look up that hadley.edu. i couldnot find anything could you please write again, we live about an hour and 1/2 from ia. city. thank you so much janap

• Re: Re: Re: took steps
• Posted: 2008-04-01 16:58:11 By Darran Z
• Go to www.hadley.edu
  Click on PROGRAMS on the left column
  Click on FAMILY EDUCATION PROGRAM (which would be for you as a parent and any siblings, grandparents, etc).
  
  It is free of charge. They do this Distance Education mostly through mail and e-mail. Some classes are online.
  
  Darran

• Re: Re: Re: Re: took steps
• Posted: 2008-04-01 19:58:50 By jana p
• Darran, thank you for the web site, it makes my heart and head hurt, its so much to take in. I dont know what to do, its all happing so fast it seems like. I know i need to to whats best for kole, i just feel well i dont know for sure what i feel, im scared!!!! MY feeling seem to come out at different times, heart racing, mind going wild with thoughts, i need to breath, and i feel like my husband takes this so easyly, why is not not this emotionaly?. Maybe its because im a stay at home mom. I gotta go we are going out side, thanks janap

• Re: Re: Re: Re: Re: took steps
• Posted: 2008-04-02 00:21:34 By Darran Z
• Well, look around the board. You find many people with RP diagnosed at different ages and are successful people. I was diagnosed with Rp as part of Usher Syndrome (I'm profoundly deaf in addition to having RP) when I was 6 years old. I never let that dictate what I wanted out of life. Someone wisely posted "RP doesn't drive you". What is "normal" for us may not be normal for you (even among normal people normal is different, look at cultural differences among English speaking countries). There are people who do not let RP get to them. The key here, in my opinion is education--educating yourself about what RP is and is not, educate yourself of resources available to you and your son, educate yourself of the laws surrounding those resources, and most importantly, educate yourself that it is OKAY to be different.
  
  Often we go from Point A to Point B directly. Sometimes we, RPers, need to go from Point A to Point C before getting to Point B. It may take longer, but the end result is the same.
  
  If you are unsure what to do, ask questions. Someone has an answer or know where to get the answer.
  
  I think once you get into Hadley if you want to learn about blindness and how to help your son remain independant, things will calm down once you understand what is at stake. The instructors there are awesome. All of them blind, with a few exceptions of a few sighted folks. They have many years of experience in various careers, both in private and public sector. They really care about their students (over 10,000 of them!) and help with many things, including "counseling" so to speak. I do not regret joining Hadley when I did and I'm still a student.
  
  But first thing first, understanding what is happening and what your son needs now.
  
  Darran

• Re: took steps
• Posted: 2008-03-31 10:18:01 By Carol C
• Jana, a friend of mine has her own Braille writer, so she can translate into Braille anything her daughter wants to read, and so she can volunteer translating for others. She has enjoyed this! I do not know where she got it, I'll try to connect with her. Carol

• Re: Re: took steps
• Posted: 2008-03-31 10:23:15 By Darran Z
• Carol,
  
  Braille Writers are made at Perkins School for the Blind in MA. You can get used ones off eBay once in a while and there are other lists that are geared towards those who are blind (BlindAttic and BlindTreasures for example). There is also a few peple who repair them that end up with parts and rebuild them. I know of one on Long Island.
  
  For any braille transcription these days, one needs to be certified and the National Library Service is the place to go for this. It is not easy and is harder than you'd think. More difficult than spoken language.
  
  Darran

• Re: took steps
• Posted: 2008-03-31 17:26:34 By Christy Z
• Hello my son has RP (he is 9)and just wanted to let you know that his vision teacher that comes to his school has given him a brailler and a brand new Victor Reader (talking books). They should be able to help you with any visual aides he needs.